Monday, December 28, 2009

Behind us in the grocery check out line today were a mother and her two little girls. Mary Lawrence is sometimes painfully shy and so just stared intently at them as they both asked her a million questions. "What's your name? Is that your mommy? How old are you?" But she didn't say respond and just sucked her thumb as they continued with their questions. I was busy swiping my credit card when I overheard them ask one final question, "Do you have a sister ?" And I heard Mary Lawrence say quietly, "Yes, her name is Maggie." Such a precious moment. I wasn't 100% sure until today that she really understood that she had a real sister. But she definitely does and that day when they first meet will be so special...who knows, maybe it will be sooner than we think.

Thursday, December 24, 2009

It's snowing in Dallas! Too fun. Well, we are thankful that Maggie did not end up having an infection as first thought. But she does have a virus and that's why she has been acting lethargic and not eating. She's been about the same for the past few days. She's just wiped out, poor thing. But thankfully she has not gotten worse. So we are just praying for a fast recovery and hoping that we can start planning her homecoming soon...

Tuesday, December 22, 2009

They started Maggie on antibiotics last night and this morning the blood work came back about the same so I guess it's good that her infection has gotten worse. We will know more tomorrow when more extensive test results come back. I have to admit I was really scared last night because it just all happened so quickly. At 4:45 the nurse said she was peppy and then a half hour later she was lethargic and pale and wouldn't eat (which she's never done). I know how fast things can spiral downhill in the NICU so I am thankful that it's not worse today. The doctor said if it was really bad she would have to be put back on the ventilator and she hasn't had to do that yet. She's still strong enough to breathe on her own which is great, but not strong enough to eat on her own.

I remember when she first was born a nurse told us it's not a matter of if she will get an infection in the NICU but when. So I guess we can be thankful that she has gone 7 weeks (really 26 if you count the time in utero) that she has gone without getting one. Babies usually develop lots of antibodies in the third trimester and since she didn't get that third trimester she doesn't have as much immunity to bacteria. Thankfully the breast milk helps as well. But good news is that she is 4.5 pounds now, which is much better than 2.5 when fighting infections!

We were hoping she would maybe come home next week but now it doesn't look like it. We'll see ...we're just praying that she recovers quickly from this and that it won't affect her progress too much. It's interesting that the more time that goes by the more confident I am that bringing her home - even if she's on oxygen and a monitor - is better than staying in the hospital. She needs to be away from all those germs and she needs to be in my arms more. I know that our holding her a lot - and kangaroo care - has made a big difference in her progress. And Justin and I haven't been able to be up there because we've both had colds recently and therefore haven't gotten that good quality time holding her. I think coming home and being with her family will be the best medicine for her!

Monday, December 21, 2009

We ask for prayer for Maggie. She stopped eating at 5 pm and the drs think she may have an infection. Please pray for her little body to be able to fight off whatever is ailing her. And for God to protect her and keep her strong. Please pray for the doctors to best know how to care for her.

Thursday, December 17, 2009

Had my 6 week check up today with my OB. We both marveled at what has transpired over the past 6 months. It's funny, I got so used to seeing him everyday at the hospital that I found myself missing our daily chats. He would come sit on the edge of my hospital bed and talk me through my worries. No doubt God led me to him for a reason. He had a way of always softening the constant bad news we received. Even though he knew that the odds were so slim that this would all turn out okay he still managed to encourage me and give me hope. That is truly a gift, I think.

I started crying today when he told me that I have given a gift to Maggie that not many could give by staying in the bed for so long. I told him that it was only because of the grace of God who strenghtned me. I told him that I can't believe it myself when I think about what I went through. I remember at 14 weeks thinking that 28 weeks just seemed impossible and so long. But I told him it was like something just washed over me - a peace from God - that protected my mind from going to the dark places and allowed me to make it through each day. I felt God's presence more than I ever in my entire life. I know that our omnipresent God was not more present in my life than he was before - because he is always equally present - but during this time I felt it even more. And I am so thankful to Him for that.

Wednesday, December 16, 2009

Maggie is doing better today. She probably will come home on oxygen unless she improves dramatically over the next few weeks. I am a little discouraged that she has backtracked. Last week she was doing so great and they were thinking maybe a Christmas homecoming- which, honestly, made me nervous it seemed so fast. But now it will be at least a few weeks longer and I am so disappointed- I wish I had appreciated her good days a lot more!

But someone reminded me again today how truly amazing she is doing compared to what's she been through and that I shouldn't lose sight of that. And I definitely needed to hear that. I just don't want her to have to be on oxygen for long or have any long-term lung problems. I guess I was getting too overconfident when she was doing so well and have been reminded that she is still so tiny and so fragile and still 5 weeks from her due date! Poor little thing- her Type A mother is putting too much pressure on her and just needs to let her take her sweet time growing and getting strong!

Tuesday, December 15, 2009

Maggie has had a rough few days and she is not as steady in her breathing as she has been and they can't really figure out why. It's been four or five days of ups and downs and I still don't feel like we have a lot of answers as to why. We are reminded once again that our precious baby is still so fragile and we must not cease to pray for her health and continue to trust the Lord. We are praying also that God will give her doctors and nurses wisdom and guidance in how to best care for her.

They told us today that she definitely won't come home before Christmas. Even though I was so nervous about possibly bringing her home sooner, I was still disappointed to hear this. I just want her to be safely in our arms at home! Hopefully she will start improving and be able to come home in a few weeks.

Poor justin has had a cold and hasn't been able to see Maggie since Friday. Please pray that we can both stay healthy so we can be up there with our daughter. Also that Maggie would be protected from all these flu season germs and viruses and not get sick.

Sunday, December 13, 2009

Someone is becoming a little chubby! Okay, not really. But she is looking more and more like a healthy newborn. After the whole feeding fiasco Maggie is doing just fine. And I have calmed down. I hated to see her uncomfortable and constipated but she is back to normal today. And as long as she is doing okay then so am I!

Friday, December 11, 2009

Yesterday was the first day I wasn't here for a good chunk of the day (trying to get all my "appointments" in before Maggie comes home) and of course that's when a mistake was made with her feeding. A nurse that she's ne er had before started giving her formula when she's been only on breastmilk. And when I found out I just lost it. It had already been a terrible morning with other stuff and when I arrived at the hospital she was having trouble with her oxygen saturation. That's when I noticed the formula bottles and was told they ran out of breastmilk so they started formula. I was so upset. We were never told they were low on my milk nor did they tell us when they started formula. I just happened to notice, though it was 20 hours after they started. It's a big deal to switch any baby to formula- Mary Lawrence had a terrible time with it- but it can be much worse for a preemie who's never had it in her system. So all day she's been extremely constipated and unhappy and I think her breathing issues could be related to it all.

I know, I know- It's not the end of the world, I realize that, but when you are trying so hard to breastfeed and pump every few hours to be able to keep it up, to have this happen is so frustrating. The poor nurses here think I am crazy but tears just were streaming down my face for hours. And when I did try to breastfeed she didn't do well and that made my tears pour again!

I know it's not my fault that this happened but I blame myself. I just wasn't physically able to be here,but I am now. But I've been here for a while now just to make sure her stomach is ok. I am down in the cafeteria now because they make parents leave during shift change. Here I am just sitting here people watching. It's just a sad place, that's all there is to it. People in the hospital cafeteria on Friday night are probably going through much worse than I am. An older woman asked me for directions in the hospital garage the other day and ended up telling me all about her daughter who has a life-altering brain tumor and has small children at home. It was just so sad. I'm sure the garage ticket taker thought I had suffered much worse today because I was bawling as I handed her my money. I'm about to go back up now and hopefully Maggie is doing much better. I'm not sure I can say that for myself!

Wednesday, December 9, 2009

Maggie is still doing great. She is feeding with bottles (or nursing) four out of 8 times each day. Once she is eating completely with the bottle she can come home! I keep telling the doctor that I am so nervous about bringing her home too early as Maggie is progressing so quickly - much faster than anyone ever thought. But he reassures me that they will not send her home until she is absolutely ready. But it could be before Christmas! So when I am not up at the hospital I am trying to get organized at home. I think the "nesting" that pregnant women experience later in their pregnancies is happening to me now since I technically should be pregnant right now. I have been cleaning out every closet in the house and labeling everything and making huge piles for the goodwill. I love knowing where everything is again! Slowly but surely our lives are getting back in order. And it feels good.

Thursday, December 3, 2009

There is something to be said for buying a large fountain drink at Target and then wandering aimlessly through all the many product-filled aisles. It is one of those great things about suburbia that I once took for granted. Same with driving around to do errands in my car. A task I once thought mundane is now so much more exciting. I got behind the wheel on Saturday for the first time and it was like I was 16 again! On Tuesday I took Mary Lawrence to school and, minus the three meltdowns she had before we left the house, it was a pretty good second day on my own (Justin's parents left this weekend and Justin started back to work). I guess going back to being "Mom" again was not as tough as I feared. I keep telling myself I really need to enjoy my ability to go about life somewhat normally before Maggie comes home because we won't be able to go out much. And her homecoming may be sooner than we think. Yesterday I fed her my first bottle and tomorrow I will try to nurse. And I can bring her clothes to start wearing as she will move out of her incubator soon!

Here are some photos:

Mimi holding Maggie for the first time

Daddy and Maggie

You can see how tiny she is still is next to my hand.

Yes, it snowed here yesterday as I was about to leave for the hospital. We threw on our coats and enjoyed the short-lived treat.

Tuesday, December 1, 2009

Maggie is doing much better today. They haven't had to put her back on the CPAP, for which we are so thankful. She has not had as many "episodes" and we think it is because they are giving her new medications and have adjusted her oxygen settings. It is a little strange that they can't give us clear reasons why she had such a setback but I guess knowing it's pretty common for preemies is reassuring. A few good things: she is now 3 pounds, 4ounces; they are trying to let her regulate her own body temperature by turning down the temp of the incubator (in preparation for moving to her a crib); and they fed her with a bottle today for the first time to see how she would do with a nipple and she gulped the whole thing down in 22 minutes! So that's all good progress for such a tiny person!

Looking at her today I can tell she is getting a little bigger and starting to look more like a healthy baby. It is such a blessing to have her here with us. This weekend we put up our Christmas decorations. Throughout my time on bed rest I thought about how sad it would be to put up our stockings if Maggie didn't survive, not knowing if it was the right thing to put up a stocking for her or not. What an awful thing that I know several of my friends are going through for the first time this year - trying to figure out how to celebrate our the birth of baby Jesus all while mourning the loss of their own babies. I really thought that was going to be us this year. And it's kind of thrown me off that it's not. It just doesn't seem fair. That's why I burst out sobbing when we actually hung Maggie's stocking - something I had hoped and prayed for - because I know while we celebrate there are so many others who are suffering.

I just hope that I never forget what an emptiness and sadness I felt last year after losing a child through miscarriage and this year with just the mere thought of losing Maggie. It is those experiences that have given me such a compassion for others going through similar circumstances. And hopefully God will use that compassion for His good purposes. This year I pray that He will bless our friends who mourn and comfort them in a way that no human can. And give them a joy that can only be experienced by knowing our Savior who was born in a manger 2,000 years ago.

About Me

Musings on Hope was started in 2009 when I was put on bed rest for a very serious pregnancy condition called PPROM. At 14 weeks gestation my water "broke" and I lost all amniotic fluid. We were told that only a miracle could save our baby because without any amniotic fluid our daughter would not develop lungs, and even if she did survive, she would be severely disabled.

Doctors recommneded we terminate the pregnancy, but we refused. Instead my husband and I spent the next 15 weeks praying fervently for miraculous healing. Maggie was born at 29 weeks and miraculously survived. Our journey has been long and arduous, but nearly four years later we are continually amazed at what God has done in our lives, particulary in Maggie's. This blog has chronicled our journey through hospitals, specialists, therapists, and many unknowns. Trying to navigate these waters while still trying to provide a joyful and meaningful for my young children has been my goal all along.